Monday, July 24, 2017

Week 205: Thinking ahead

Seriously, people, where is the summer going? I am already deep in the mad scramble to assemble some sort of delicately balanced child care program for the fall. Our beloved afternoon nanny is leaving us at the end of next week to move back to Milwaukee. Both kids are going to be in school 5 mornings a week starting in September, so that takes care of the mornings more or less. After a couple of weeks of searching/panicking, I think we have someone pretty good lined up to cover the afternoons.

I've definitely noticed a change in myself when it comes to CF and child care. In our first few searches, I always brought it up very early in the process, if not during that first phone conversation then definitely during the interview, and it was a big serious thing. Now, I'm bringing it up at the very end. Like, here's the job offer, and oh, by the way, one of my kids needs medication every time he eats and I hope you love hand sanitizer. I guess it would be different if I were hoping the person would do his therapy or something, but I'm not, and at this point I feel like I want him to just be treated like a regular kid as much as possible. I don't want to form an impression in someone's mind that he's anything other than a curious, lively almost-four-year-old boy. Also, having been around the block a few times, I've discovered that pretty much anyone, including a college sophomore who frequently leaves his house keys in our living room, can manage to give enzymes accurately before every snack. So why make a big production of it?

I'm trying to decide whether I want to continue "food school" in the fall. It was easy enough during the summer--I only signed Lemon up for 4 days of camp instead of 5, and took him to food school on the free day. During the school year, though, he's booked with school every morning. So if we were to continue, it would mean squeezing it into the afternoon somehow. If we're still fitting a nap in there, which at the moment we are at least most days, it's pretty tight. A couple of weeks ago I had to take him in the afternoon instead of the morning because of his therapist's schedule, and I have to say it was pretty pointless. I woke him up from a nap to go, and all he wanted to do was sit in my lap and sulk once we got there. Really not the best use of time.

If I felt like he were making consistent progress, it would be a no-brainer to continue. But, I'm honestly not sure whether we're making progress or not. Every so often, I'll hear him mimic the language they use at food school. Or see him do something with food that the therapist there does. The thing he does most consistently that he learned at food school is to spit things out. And I totally get it, being able to spit things out makes him feel safe and in control and gives him an out if he gets into a food situation that he can't manage and all that. But OMG I am sick of dinner being spit on the floor. Especially because Lime has clearly picked up on the idea that spitting is somehow now OK in our house, so as soon as he sees Lemon do it, he does it, and the whole thing kind of devolves from there.

To further complicate matters, I feel like right now we're in one of those funks that we go through from time to time where Lemon is clearly working on some serious cognitive development and as a result is eating basically nothing. He definitely can't do two things at once in this respect. So, maybe I just need to let things play out for a little while longer. You'd think by now I'd be used to not knowing if some treatment was working or not, but it doesn't seem to get any easier!



Monday, July 17, 2017

Week 204: Pink carnations

One of the hardest things about being a working parent is dealing with child care. Figuring out the right situation for your kids, finding the right providers, making sure that all the time you need covered is covered, making sure things are being done the way you want them. All of it is a challenge and it is a constant challenge because at any moment, usually the least convenient moment, one link in your carefully calibrated care chain is likely to break.

We have been very fortunate to have a string of excellent people taking care of our kids. The first person who took care of them was a woman named Julie. Way back then, in the waning months of 2013, we were still living in Boston and I was interviewing from afar, trying to get child care set up in Madison before we moved. I liked Julie right away, and she was clearly head and shoulders above everyone else that I interviewed. When we moved to Madison and met her in person, I knew she was the right person for the job. She was very experienced, calm, collected, responsible, and she got Lemon to fall asleep in her arms the first time she met him.

Over the years that she worked with our family, she was the source of a lot of stability in what was otherwise a fairly turbulent time. She took great care of Lemon, the cats, and our house and made it feel like we were still a functional family, even through the great swings of Lemon's first years, when he was very sick a lot of the time. She could get him to eat when no one else could, and hers was the first name of a non-family member that Lemon ever uttered.





Julie was the first person to guess that I was pregnant with Lime, before my own mother I have to say. One morning, very early on, when I was feeling awful and trying to hold myself together enough to get out the door to work, she just gave me a funny look and said, "So, when are you due?" She was so attentive during the pregnancy, texting me during all the various tests and monitoring that I underwent during the second half of the pregnancy, when everyone thought that Lime was growth-restricted. She took great care of Lemon while I was in the hospital, and was one of Lime's very first visitors the day after he was born. She dressed up and put on extra make-up for the occasion, and brought me a bouquet of bright pink carnations to decorate the hospital room.


Julie's time with our family came to an end when a series of health issues of her own prevented her from continuing to work with our increasingly active kids. We were both very sad when it became clear that the situation couldn't go on any more, but it was clear to both of us that Julie needed to focus on her own health, and Lemon and Lime needed someone who could keep up with their frenetic pace. We stayed in touch since then, with me sharing pictures of the kids and Julie offering tips and encouragement. We shared a dream that, once the kids started school in the fall, with her health improved, Julie could come back and watch the kids for an hour or two in the mornings before school, doing all the things she loved--picking out their outfits, combing their hair, and keeping them out from under foot while she did housework.

Sometimes, dreams remain dreams. It is with a heavy heart that I have to share with you that Julie passed away unexpectedly this past weekend. Her passing is a reminder that, no matter who you are, life is fragile and fleeting. Thanks Julie, for everything that you did for us, and for all the love you gave to our boys. I hope you are sitting on a lounge chair somewhere in the shade of a palm tree, with your toes in the sand and a sea breeze lifting your hair.





Monday, July 10, 2017

Week 203: Cake by the ocean

We are back at home in Madison after our big family trip to the beach. I can't tell you how amazing it feels to have planned a trip and actually gone on it! The trip wasn't without its ups and downs, mind you, but none the less, we felt more or less like your average family on a vacation. Here's how it went:







We flew to Reagan airport in Washington, about a 2.5 hour drive from the beach. We decided that it would be unwise to attempt to both fly and drive on the same day, so we spent the night in a hotel by the airport. Because we were just staying there one night and didn't want to make it a huge production, we decided not to do an overnight feed for Lemon. That may have been an error, since the excitement of travel plus the 1500 calorie shortfall basically made him a complete wreck the next day. We started driving fairly early the next morning, as did approximately everyone else on the Eastern seaboard. Traffic was pretty intense, extending our 2.5 hour drive to 5 hours. Of course, the great benefit of traveling in a car for 5 hours with two kids is that at any given point in time, one of the two will have enough energy and rage to be screaming. Lime slept for the first part of the drive, while Lemon took the lead on vocals. When Lemon finally passed out, Lime immediately woke up, began weeping, and intermittently yelling "Home! Home!"









































It was all worth it once we got there, though, because Lime had never seen the ocean before, and when we finally got to the beach he could not believe his eyes. Lemon was also thrilled. Plus, Uncle Jared and Auntie Lauren were there. We got all our various equipment set up in the beach house and tried to settle into something resembling a vacation routine. Manual PT went surprisingly well, which is good given that I don't think we had the physical capacity to transport the vest in addition to all the other myriad supplies that we needed to bring with us.. Lemon was generally very cooperative, and his lingering cough actually completely dried up on the trip, making us think that it was allergies after all. We brought Cayston with us but we didn't end up using it.






Lemon and Lime had a great time getting to know their cousins, and I was so glad to finally be reunited with my extended family after a brief 3 year absence. With all the various shenanigans in our lives, I think I've missed two weddings, a funeral, a Thanksgiving, a family reunion that I organized, and numerous other smaller occasions besides. So it was wonderful to have a week with no particular plans to just soak up being reunited with some dear people that I've known my entire life.








The only teensy wrinkle in the whole thing was that our family came down with some sort of gastrointestinal plague. Papa Bear was the first to fall ill. We suspected at first that it was food poisoning, and after an unpleasant night, Papa Bear had to spend the entirety of the next day in bed recuperating. I didn't feel too hot myself, but I attributed that to the fact that I had to deal with the kids without his help for an entire day (of course, the only day of the trip during which we had significant rain). Nona was a hero and basically saved me from implosion, but it was a near thing. In retrospect, it seems clear that I had a fairly mild version of whatever Papa Bear had. That night, both Opa and Lemon succumbed. Without going into significant detail, I will report that by the end of the night Lemon was sleeping on a folded bedspread on the floor covered with a towel, and I have never done more laundry on a vacation in my life.
















At home, we have a pretty strict rule that if a night of tube feeding "doesn't go well," the next night we only attempt one carton of formula instead of the usual three, and then build back up to three over the subsequent nights. Because we were on vacation, and because everyone else who was stricken by the plague only had one "bad" night, we forgot our usual rules and went ahead with three cartons again the next night. This proved to be a significant strategic error. More laundry. Amazingly, Lemon was his usual energetic self during the days, with no hint that anything had been amiss at night.

Fortunately, everyone was more or less in working order for the journey home. There was no traffic, so we zipped inland in one swoop and spent a day exploring the Air and Space museum, where by exploring I mean that Lemon and Papa Bear looked at exhibits while I frantically tried to keep Lime from injuring himself or disappearing into a crowd. Finally it was time to fly home, and here we are.












Amazingly, today is Lime's second birthday. I can hardly believe that he is two, although he clearly read in the child development book that he is supposed to be having a verbal explosion around now and learned at least 20 new words on our trip. We had a nice party for him with our family while we were at the beach, so we just did a quiet celebration for him here tonight. His sunny little personality has gotten me through many dark times in the years since he was born, and I can't imagine our family without him. Happy birthday, little buddy. Here's hoping we'll be celebrating with cake by the ocean again next year.










Monday, July 3, 2017

Week 202: To the coast

We made it. I'm still not sure exactly how, but nonetheless, here we are, soaking up sun, sand, and salt water on an Atlantic beach. I won't go into detail on the journey, which went about as well as could be expected. I prefer to focus on the result--we are all here having a good time, spending time with family that we haven't seen in far too long. All of our CF related plans seem to have worked out fairly well so far. The travel IV pole made it intact, the case of formula did not explode while in our checked luggage, TSA did not make me unpack my giant carry-on bag of medical supplies, and manual chest PT is going fine. Lemon's cough has actually pretty much disappeared since we left Madison, which makes me think it really was just allergies. So, we brought Cayston with us as a back-up but I think unless something changes pretty dramatically we won't use it.

I'm going to leave this one brief tonight, since I am on vacation after all (and Lime has decided that in order to maximize the vacation experience, he will now wake up _before_ the birds), and will provide a more in-depth summary of the whole trip once we're looking at it in the rear view mirror. Until then, happy Independence Day too everyone!



Monday, June 26, 2017

Week 201: On the floor

Lots of moving parts this past week as we launched into summer. On Tuesday, we had Lemon's first session at "food school." He loved it--continues to view it way more positively than summer camp. Each session starts off with 15 minutes of "gross motor" play to get the kids into the right frame of mind to sit still and receive eating therapy. Miss Rachelle had a technical term for it, but I believe the vernacular is "getting the ya-yas out." In any case, Lemon loved all the various toys, the ball pit, the giant foam blocks, and so forth. And the strategy was successful, in that he was then willing to sit still at the table for almost 45 minutes and consider the various things that Miss Rachelle was asking him to do. He was game for most of it, and seems eager to go back again tomorrow for another session. The purpose of the first session was mainly for Miss Rachelle to make sure that she had found the approach that would be the best fit for Lemon, and she thinks she has, so tomorrow we should be getting some take-home materials so that we can work on reinforcing some of the concepts at home.

On Wednesday, we had our big clinic visit, which took approximately forever. We started off with height and weight--good news on those fronts: Lemon has gained 2lb and grown an inch in the last 3 months. Not bad for a guy who eats literally nothing! He's doing so well, in fact, that our nutritionist thought it would be OK for us to go down a bit on the tube feeds in order to get him hungrier as we get further into feeding therapy. Then, it was off to pulmonary function testing, where the goal is to exhale as forcefully as possible into the mouthpiece of a machine that measures how much air you are blowing out. This was Lemon's first time doing it, so the main idea was just to have him try it and get used to the machine. He liked watching the candles on the computer screen go out as he blew into the tube. Unfortunately, I was unable to convince him that making a loud roaring sound is not exactly the same thing as exhaling as hard as possible. Still, it's a start, and the whole point of starting now is so he can learn how to do the test correctly--as you can imagine, the actual readings that you get from the test with a kid this young are of dubious accuracy.

After the PFTs, we met with our nurse practitioner. Generally speaking, she thought Lemon was doing great. She got to take a good look at him, since we are going through a strong "clothing optional" phase of development at the moment and he spent the entirety of the visit zipping around the exam room wearing nothing but his undies. She didn't really have any answers about the right approach for the cough he has right now. It's not what I would consider his baseline (or, at least, what I used to consider his baseline), which is no cough at all. But, it's certainly not what he usually is when he is sick, which is quite a lot of cough, and coughing in his sleep, which he's not doing at all right now. We did talk about whether or not we should just adopt the "usual" schedule for Cayston, which is 28 days on, 28 days off--our nurse practitioner didn't really have any guidance on that, she said I should do what I thought was best (because I'm the clinician?). Originally, it wasn't our plan to be on a schedule, but rather just to use Cayston as our intervention when he was sick. In practice, though, that has translated into the 28 on/28 off schedule almost exactly. By that schedule, we were on in March, off in April, on in May, and off in June. So, the big question Papa Bear and I have to decide in the next couple of days is whether we are going to be "on" for July.

Of course, the timing is really lousy because we're going on vacation next week, but on the other hand nothing about CF is convenient and I do feel like it is important to intervene aggressively now so that we preserve as much lung function as we possibly can. But on the _other_ other hand if there isn't a bacterial infection going on at the moment, there wouldn't really be much point to doing a month of inhaled antibiotics. We did do a throat culture at this visit so I'm waiting on the results from that--I suppose if we see anything besides normal flora there, that would be an indicator that would push me towards biting the bullet and doing the Cayston. We shall see. I'm not even going to get into the number of phone calls it took us to get our Cayston prescription refilled this week so that we'll be ready to do the Cayston if we decide to go that route--but it was a truly ludicrous number, an order of magnitude larger than the "1" you might expect given that this was a refill.

The other thing we did at this clinic visit was have some blood drawn to repeat Lemon's liver tests. As you may remember, we had them done late this past fall, when he had a PICC in, and the results were sky-high, presumably because he was really sick at the time. We repeated them a couple of months ago, and the levels were still high, but way less high than before. On Wednesday, the levels were ever so slightly less high than that, but still outside the normal range. So, our current plan of action there is to recheck again next month, and if they're still high after that, schedule a GI consult to get some thoughts. Since Lemon has never had liver tests inside the normal range in his life, I find it hard to imagine that next month will be that magic first time where they come back normal, but we shall see.

In the mean time, we are very excited to be gearing up for our summer vacation to the coast. It will be Lime's first time seeing the ocean, and I suspect he will love it. I've started the inevitable process of making mental lists of things, so many things, that we will need to bring with us. Packing is off to a promising start though, in so far as the portable IV pole that I ordered does appear to be small enough to fit in our largest suitcase. Filing that one under "things I never thought I would have to worry about when planning a trip."

Monday, June 19, 2017

Week 200: A peach

On Wednesday of this week, I slipped out of Madison for a 72 hour trip to Boston to revisit my pre-kid, pre-Madison life and some of my oldest and dearest friends. Life here is all-consuming, and I was surprised how easy it was to shed it for those few days and become, however briefly, my younger care-free self again. I can't thank Papa Bear enough for the opportunity to go. 72 hours isn't a lot of time for catching up with a lifetime's worth of friends, but it's enough to give a little oxygen to all those flickering flames and keep them burning until the next visit.

Meanwhile, back in real life, Lemon continues to cough. Just a little, and not at night. So, we still have no idea what's going on. Everyone else seems to be more or less over the summer cold that kicked off this round of everyone's favorite CF game, "Cold, allergies, or infection?" So, "cold" is seeming less likely, which leaves us with "allergies" or "infection." I'm not especially eager to leap into another round of Cayston, especially since if we start now, we will be doing Cayston while we're away on our big family summer vacation. Of course, if that's what it takes we'll do it, but I would like to be a little more confident that we aren't fighting allergies with antibiotics before we start. We have a clinic visit coming up on Wednesday (along with our first-ever pulmonary function tests!), so I'll see what our nurse practitioner thinks at that point.

Today, Lemon had his first day of summer camp. I'm glad to report that, in spite of the less-than-impressive phone conversation that I had with one of the camp staff last week, everything seems to have gone fine. I made up a printed sheet with all of Lemon's key medical instructions on it, gave a copy to his main teacher, and put extras in plastic bags in his lunch box and backpack. Lemon handled being dropped off at a new place with strangers very well--he was a little teary when I left, but report is that he quickly pulled himself together and had a great day. His teacher said that he was "a peach," and also noted (without my having said a word on the subject) that "he doesn't eat much." At least the camp fulfilled its main goal, which is that he was EXHAUSTED when he got home and promptly collapsed and slept for 2.5 hours. Victory!

Speaking of eating, tomorrow Lemon has the first of his weekly feeding therapy sessions. When we were setting this up, I had hoped to capitalize on what then seemed to be a bit of a trend towards increased willingness to eat. Of course, now that we're ready to start, the pendulum has swung firmly back in the other direction and we are once again in the land of approximately zero oral intake. Still, I'm hopeful that we'll make some progress. I've already heard Lemon imitating some of the language that he heard during his feeding evaluation, so intellectually he seems to be game. With any luck, his therapist will be able to convert some of that intellectual energy into practical results!

Today marked the official beginning of my next round of marathon training. I went out for my evening run as the last few summer rain showers were moving through, and they left some serious beauty in their wake--seems like an auspicious start!




Monday, June 12, 2017

Week 199: Heating up

Just because there weren't enough ambiguous coughs, sneezes, and other respiratory sounds in my house last week, all 3 of the males in residence decided to come down with a full-blown summer cold within 36 hours of my completing last week's post. We briefly talked about starting Cayston again, since things were sounding decidedly not good for a day or two, but we decided to try to ride it out instead, and I think that was the right call. At least I felt like I had two canaries in the coal mine this time: if Lime and Papa Bear will still symptomatic, there was no reason to think that Lemon's symptoms were caused by anything more than the cold. And, knock on wood, that appears to have been the case. All three of the boys seem to be more or less back to normal again, and just in time, since I'm not sure how many more consecutive weeks of respiratory symptoms I can handle.





Fortunately for my nerves, summer seems to be on the way. Lemon finished 3-year old preschool this past week, and summer camp starts next week. I'm interested to see how he responds to the challenge of being in a new place, with new teachers and new kids. Today I realized that I had never heard back from the program leader at the camp that I'd contacted about doing enzymes and whatnot, so I sent a follow-up email, and within a few hours he called me and said, "So, you have some medical concerns?" I rattled off something about medication with every meal, and oh by the way he has a G-tube and if it falls out it's urgent but not emergent, etc etc. "Uh, OK. Do you have this written down somewhere?" Luckily, I still have the sheet I made for Lemon's preschool teachers. So, hopefully everything will be fine. One good thing is that Lemon actually can advocate for himself now. He knows that he needs to take his enzymes, and will speak up if he doesn't see them. He also knows about his G-tube, and will say something if he notices anything wrong with it ("if" being the operative word here).



Summer on the way means that summer travel is fast upon us. It's hard to believe that our big family trip to the beach is just a few weeks away. Our plan is still to leave the vest at home, and do manual chest PT while we're away. In preparation for this, Lemon and I have started "practicing" every day, meaning that I do one full round of manual PT with him around mid-day. He resisted a little at first, especially since we had to figure out what positions worked best (he's grown ever so slightly since we last did this regularly, about 1.5 years ago). But, I think we've got it now and although he does protest a bit (because he is 3 and therefore must protest everything), I think he actually kind of enjoys it since it is 20 minutes of my completely undivided attention.

Summer is also birthday season in our house. I can scarcely believe it, but little Lime will be two years old in less than a month. I'm not ready. Just a few extra months of 20 months old, that's all I ask!